Our own little Superhuman

There were many moments throughout the Olympics that made me get a lump on my throat – Jessica Ennis getting her gold medal, all the unexpected medals and the sense of achievement and pride of the athletes, at the opening ceremony when the olympic medalists waived their right to carry the torch on behalf of young athletes and let them carry it instead, Tom Daley fighting for a medal as if life itself depended on it after going through such a traumatic year with the loss of his father, the advert for the paralympics – the Superhumans – those who have limitations and challenges beyond belief and that push themselves to the limit and make a point of living life to the full!

All of these people make up for those that always make me wonder – ‘How did he/she make it into adulthood? Is it for the divine purpose of hurting others?’ I am talking about the Breiviks, Ghadafis and every other tyrant in the world.

Today I looked across to Amelie, sitting on her special blue chair (an attempt to keep her cool as she doesn’t deal well with hot weather) and I have realised that at 33 months and despite all her limitations, set backs and challenges, she has achieved and accomplished more than many people in a lifetime!

Amelie is not able to walk or run but she has inspired her father and close friends and family to run marathons to total more km than many will ever run throughout their entire lives! And now because of her hundreds of people have signed up to take upon themselves to run 10k everyday, in her honour and in honour of other children that like her, Archie, Isabella and Luca cannot run – The CATS 10k Challenge, 13 in 13.

I certainly never expected her to be a good cyclist as she wouldn’t be getting that skill from any of us… but cycling she has inspired, 600 miles in 6 days and climbing over some of the toughest mountains in France! – Ride2Recovery2

And at her young age golf would definitely be a challenge regardless of the circumstances… – Charity Golf Day

But Amelie has achieved, inspired and accomplished a lot more than just the above.

She cannot talk or read and yet it was her determination to hang on to her abilities until they were no longer possible that took me and Daniel to sit through hours, days and weeks of research and paperwork in order to establish The CATS Foundation. We know that Amelie’s kind nature meant that she would want a treatment to be found for other children in the future, that she would want to help other families and children in the same situation as us, that if she could talk and read and grow into an adult this would be her goal. And so we are her eyes and voice and made it happen.

And through this whole process we made friends, friends that we would have never met otherwise, people that are also Superhuman in their own way, for they too dedicate their lives to something a lot bigger than the ordinary:

- we have met Ken and Julie Bihn, an extraordinary couple who set up the Cure Tay-Sachs Foundation in the US, they were our first contact in our ‘new world’, having set up the foundation in 2007 they have tirelessly and relentlessly raised money and awareness for Tay-Sachs ever since, their work in honour of their 12 years old daughter Dakota has allowed for research to develop to stages that were never thought of 10 years ago. We took a lot of inspiration from their work to start The CATS Foundation.

- through Ken we were introduced to Professor Timothy Cox at Cambridge, another outstanding human being who has dedicated his career (and probably most of his leisure time) to the study and research of treatments for lysosomal storage diseases affecting the brain, diseases like Tay-Sachs and Sandhoff. Professor Cox, or Tim as he insists we call him, has not only astonished us with his perseverance and passion for his work but also for his compassion, patience and understanding towards the children and families affected. He has been involved in the charity since birth and keeps us updated with the current research progress and any information we need.

- Julia Ogilvy was mentioned to me by Professor Cox as a guest at our first meeting. I didn’t know who Julia was and I couldn’t quite understand why would she be attending a meeting about Tay-Sachs, until I researched and found that Julia’s life had changed dramatically since two of her very close friends’ children were affected by the disease. In fact I should rephrase that – Julia took the decision to change her life dramatically! I felt I knew Julia before I met her, through her book ‘Turning Points’ I got to understand what a remarkable woman she is and how others have turned very serious and difficult situations in their lives into something greater than most would have done in the best of situations. I must confess that reading Julia’s book at that particular time was all the therapy I needed…

Perhaps it is true that good people attract good people, for that is certainly what Amelie has done!

Of course I would prefer not to have met any of the people above, nor to have extensive knowledge of Tay-Sachs, or to have started a charity, my first preference would always be to have an healthy child, but that is not the reality.

Lastly I know that we have a little Superhuman as we watch the immense effort and concentration that she has to put on to hold her little sister’s hand, but she still does it every time they are next to each other!

2 Comments

Hi
I found your blog through Ronan’s blog and couldn’t not leave a comment. Your daughter sounds amazing, and she is so beautiful. How lucky you are to have her but how I wish she could be cured. You write so from the heart. I wish you all the best. I have donated to CATs.